Calling all who have a parent in a care home.

[Tolkienista]

My mother turned 96 this week.
Her health is gradually declining, including her mobility.
She is in cognitive decline, though she'd deny that.
Currently she has an ITU which has been treated with antibiotics since Thursday & she's very confused as a result
She's been in a care home for the last four months after a fall last April which seriously affected her mobility.
We love the care home. Her room is fantastic, great meals, lovely residents, great carers too. We were so pleased we found it.
I can honestly say it feels like extended family when we visit.

However, she's still not properly settled in.
I'm writing this because after visiting her today, everything was so negative.
Culminating in her saying " I want to leave"

I guess why I'm writing this is, how do you cope with a situation like this?
I've spoken to the carers,.managers too & they think she's doing fine.
She lived independently for 95 years, so it was never going to be easy adapting to the confines of a care home.

As one of three siblings, I get the brunt of her frustration, I live closest to her & I'm her next of kin.
I see her four times a week, around one and a half hours per visit. I'm really doing my best, but it's really hard.
She gets lots of family visitors too across the generations.
Any observations will be very welcome from those of you who have a close relative in care.
Thanks.

There is a powerful idea that older people of that generation (80+) are all sweet and lovely and never complain. I have not found this to be the case! That’s not to overly criticise them: they have a lot of frustrations and limitations to deal with. A lot of them lose the 'politeness filter' they used to have and just come out with all sorts that isn't practical or possible. And because there is an expectation that you the adult child adhere to their wishes, you are scrambling round trying to fix the care home problems, find other care homes, get them home, when none of this may be sustainable - but we feel awful at the thought of saying 'No, that's not possible, I just can't do that'. Because it feels like you're letting down your lovely mum or dad who cooked for you, dried your tears, took you to the park. But the world is different now and your miserable task is to do the best you can to keep them safe, well cared for, as content as possible. You can't do the impossible.

I think part of it is when they see you? I recall with my Nan when we brought her home sometimes she would ask when she was going back.

I do feel for them though as particularly when they do still have a memory of sorts.

PPs have mentioned the possibility that when she says she wants to go home, it might not be to the home she lived in immediately prior to the move, it could be the one she grew up in, or her first marital home, and that she is wanting to return to a life when she was younger. So you will never be able to make that happen, and even if she could 'go home', she may not recognise it as home.

Could she be talking about home as in somewhere she lived decades ago when she was well. That's common, harking back to days when things were easier. So not necessarily wanting to go back to the most recent home from which she came to the care home?

And are you visiting too much? It can unsettle them or delay them settling in. If you're visiting four times a week, and other family members also visit, how much time does she get to join in activities in the home or get to know other people there?

Sounds just like my DM 12 months after moving into her fantastic care home. Like most on here I kick the can down the road and remind her of all the positives, also remind her of how poorly she was. I joke to her that she could be in Buckingham Palace and she'd find fault.
UTIs usually cause confusion so hopefully she'll feel better soon.

Very similar situation to my MiL. It took a really really long time for her to settle in the most fabulous care home. She was constantly saying no one was visiting because she didn't remember when people had seen her ( which was almost daily from friends and family. )

There are a number of things that we found have helped. We got her a white board and one of those little instant Polaroid cameras. On the board we write who visited yesterday, today and who would come tomorrow. Each day we took a photo of her with the people who visited and what she had done with them ( e.g. drinking tea, watching a film, out to a cafe etc. )and then wrote the date and day on the photo.

We also got her a dementia clock which has not only the date and time but also if it was morning, afternoon or evening as she was confused as to the passing of time.

We made her a photo album of family members past and present with labels. So there was something to discuss. DH also has a load of family cine and video films on his i pad which he took with him to show to her.

The home has a sort of visual timetable to explain when the many activities were taking place.

It's a hard road but she seems a little more settled now.

OP it's really hard and I'm sorry for you and your mum. I am no means an expert, but from experiences from my own parents, both passed, mum with dementia and dad from cancer (home care, then hospice).

• How spaced out are her visitors? When you are there, assuming she is not feeling particular unwell, does she seem to enjoy every moment of your visit?
• My dad found that 24 hours without visitors was hard. If you see her 4 X a week for 1.5 hours per visit - that's 6 hours a week? You might find that say 2 1.5 hour visits and then 30/40 mins on the 4 other days would still only be 6 hours a week, but she'd have every day broken up with someone to see, and that might help her.
• Do you ever take her out? Granted maybe not in the snow! But If you could even a wheel round the grounds might help. Obviously a coffee out or something would be even better, but that might just not work.
• Can she (and this might be nope, not a chance) engage with anything? My Dad was not having any cognitive problems until the last days, so it's different, but we had a nice routine in hospital, where my 10 year old would find grandad's purse, get out 2 pounds, go to the shop (in the hospital) and get the I paper. They would then sit on the bed together and complete the puzzle pages. It was a nice, "normal" thing to do together, and they both enjoyed it. Might there be something you could do that she looks forward to particularly?
• Also gently and sadly, it may just be that the dementia means that she doesn't understand why she is there, or what to really do. That makes her lost and even more so if she has some idea she "should" have things to do. You have my sympathy.

She wants to go home. Obviously she can't at the moment. But if things don't improve returning home just isn't possible if she can't be left at all. People have carers 4 times a day which would probably still cost less than a care home. I know it's not always just the cost

@Holesintheground thank you for a reality check.
That's it, we can't do everything but we definitely aim to do our best.

@stichguru thank you for your lengthy post & excellent suggestions.
Her visits are well spaced out over the week, every single day she has a visitor.
We do take her out , which she enjoys.
She doesn't have dementia, but we suspect she's in cognitive decline which isn't surprising given her very advanced years.
She said to me today " I think Trump will end the war in Ukraine, he's not got to let it go on and on like Biden has"
We're doing our best & everyone's really valid suggestions have really helped me.

This thread is timely for me, thanks @Tolkienista. Thanks also to all those sharing ideas - and those confirming it might just be a case of keeping on with ‘we’ll see’. This is so hard because you have to accept you can’t ‘fix’ it and you can’t make them happy because they have no insight into their needs.

Even as he complains, DF also says ‘they make the coffee just how I like it’ and ‘I like this cake’ - what he doesn’t recognise is the carers also make the coffee a safe temperature, bring it to him and clear away. As they pop in, he has little chats and some company.

We suspect it’s the supervision part of 24 hour care that he hates most but we tried 4 carers (and daily district nurse visits) which wasn’t enough to keep him safe.

I need to stop going over ‘why you’re here’ again and again in my head for my own sanity but I cannot have that conversation with him.

Hi I have read your message.
As a daughter whose dad had to go into a care home. Be reassured that' the care home seems a happy place to be.
My dad going in a care home was not our decision the social worker said I could not care for him anymore after a fall and because I did not have a POA. They said he had to go in a care home.?It was the most horrendous and guilt ridden time of my life. He lasted 5 days and died. I carry the guilt every day.

For me it was like driving a truck through muddy tracks. You had to navigate very carefully so as not to get stuck whilst at the same time moving forwards at a slow yet steady pace. I suppose I mean talking about all the positives i.e. the garden, weather, what the family is doing, good food etc and gently steering her away from the negative aspects. It is so hard for them but the best place. My mum was the same at 93 so I just gently re-directed the subject to something I knew interested her like her favourite soap or bit of news about our town etc. What is the alternative? Have someone who needs medical care and support in your home where you just can't offer the nursing they need. It always reminded me of my child's early days at school.

@Carol52 💐

I know it is very hard emotionally. I feel guilt because I actually made the hard decision.

Maybe your Dad’s social worker could see he needed a team of people at that point and you can try to forgive yourself. You couldn’t have been a team of people.

@MoonHavana that’s an interesting angle, like starting school. I really want to say ‘please cooperate and all our lives will be easier’ but not in a way where DF feels like a 4 year old. Yes to focussing on the positives and, where I can, trying to make little improvements (which won’t be appreciated but I might feel better).

That is incredibly sad, I'm very sorry for your loss.

Please don't feel guilt, even with a POA if someone is deemed to need 24 hours care you cannot really prevent it.

@FiniteSagacity thank you for your post and your empathy, your thoughts are really helpful..
Today was a really low day for me, non stop negativity.
I'm so glad I started this thread because I'm looking at it in a whole different way now thanks to everyone's input.
Mumsnet is such a valuable platform.

My Mil is still at home with FiL and is wanting to go home. It's very sad. We have visits from the CPN & an Admiral nurse now and they say it's the wanting to have the security of the familiar from childhood. So it's a cognitive need for comfort, not the reality.

Can you accept that she is not happy to be in these circumstances- even if it is the best thing for her. This means that you won’t be able to make her happy. Because what she wants to be is living a ‘normal’ life from a few years ago.

I think the toughest thing is that the situation is not fixable and how you come to terms with it . It’s probably about loss of her health, fitness , mind and life. It’s not your fault it’s

When my nanna started asking to go home I said I would take her and asked where home was. She gave me her childhood area, I told her I would arrange it for her, rinse and repeat.

That's an incredibly intensive visiting schedule. With all that, plus outings, she won't ever really have had chance to settle into the community and routines of the home.

No point trying to change too much while she has the UTI, but once she's recovered I'd try a reset - for a few weeks cut right back to 1 or at most 2 visits a week, fairly short ones, and no outings unless there's a group one with the home.

I would speak to the carers, I've been a carer and some residents find it hard when families leave, they want to be taken home. Could you take your mum out to your house or for a coffee to break her day or week up.

I will admit to have found it too stressful to read the full thread. I did not put my mother into a care home, but her behaviour saw her being parked in one as an emergency measure. (Police were involved.) Every day, she demanded that she wanted to go home. I tried for so long to research alternative arrangements, but it took so long, that, by the time it was ready, she had become completely institutionalised, and couldn't function independently, anymore, even in sheltered housing. I found her a lovely place to live, but in 24 hours she demanded to go back to the care home! I just have 2 further things to say. People in care homes steal things from each other. Care homes do not seem to take any liability for the loss of possessions or valuables. My mother had her engagement ring and wedding ring stolen, and nobody could have cared less. Sorry to vent. I may have just been a bit triggered, as I feel for all of you who are trying to do your best for your loved ones.

I feel for you - it’s hard. You’ve picked a very good care home and done your best for your mum. There’s only so much you can do and you can’t “make” her be happy in the home. My dear late dad was in an excellent care home but we knew he would never be happy in it. We visited him a lot. Even if you’re just sat with your mum watching daytime telly, that will probably lift her mood. X